Firstly, it’s a condition, not a disease. But it can be brought about by a number of diseases already in your body, sometimes these are serious, sometimes they aren’t.

About Nephrotic Syndrome

If you’ve got Nephrotic Syndrome, the filters in one or both of your kidneys are ‘leaky’ which results in the transfer of protein from your blood to your urine. Normally, urine doesn’t contain any protein but people with NS develop Ôproteinuria’ which simply means there is protein in your pee.

Your body knows there’s something wrong when it realises it’s peeing protein so it reacts by retaining water, which may lead to:

Developing an infection: since you can lose antibodies (the good proteins which help you fight off infections) in your urine

Developing thrombosis: this is a thickening or clotting of the blood vessels and is also common in people with NS since there may be a change in the balance of proteins in your blood that would normally prevent this happening

Having low levels of vitamin D: since there is a loss of vitamin D-binding proteins in the bloodstream

Developing anaemia: since the proteins that normally help to carry iron around your bloodstream are off doing other things

If left untreated, Nephrotic Syndrome can develop into kidney failure meaning you may need a kidney transplant. Transplants are normally successful but there is still a small chance that the condition could return. That’s why it’s so vital to help us find a cure.

Who is affected?

You might be feeling like the only person in the world that has Nephrotic Syndrome. After all, people who aren’t affected have generally never even heard of it. That’s why we’re striving to teach people about it and make sure everyone knows just how important it is that we find a cure.

How common is it?

Nephrotic Syndrome mostly affects children but it can go on to develop in teens and adults too. Some people will grow out of it and some people might well grow into it as they get older. It’s worth noting that the majority of adults who develop this condition will usually have an underlying disease so it’s important to know all the facts about both.

Remember though, you’re not alone. This condition affects 10,000 people in the UK each year.

Treatment

Your doctor will have assessed how well your kidneys are clearing waste products from your bloodstream by performing either a urine or blood test. Both may have been done to be absolutely sure.

They will hopefully have then explained the condition to you and the different treatments that can help you get better from the inside out.

It’s easy to feel overwhelmed and on information overload in that kind of situation though, so here’s a simple breakdown of the current treatments available:

Steroids: These are often prescribed for several months and can prevent the proteins from moving from your bloodstream into your urine. In some cases, this will be a one-off treatment and you may never develop Nephrotic Syndrome again. In other more complex cases, the condition may return so you may need another course

Water tablets: These help to clear your body of oedema (that’s an excessive amount of fluid that builds up in your body’s tissues). Water tablets work by acting on the cells in your kidneys to make them pass out more water rather than reabsorbing water back into the bloodstream. You pass more urine and then the excess fluid in your body’s tissues will pass back into your bloodstream to keep your blood volume normal

Immunosuppressive drugs: These are medicines that lower the body’s ability to reject a transplanted organ by reducing the strength of the body’s immune system

It is worth remembering that these treatments may cause unpleasant and often serious side effects such as weight gain, retarded growth and brittle bones later in life. Immunosuppressive drugs are also highly toxic.

It’s for these reasons that we appreciate every small donation that you can afford to one day find a long-term cure.

Useful links

We hope you find everything you need here to answer your questions on Nephrotic Syndrome. Yet since knowledge is power and we want you to feel as empowered as possible, here are some more fantastic resources that are rich in both information and support:

The Nephcure Foundation is the only non-profit organisation committed exclusively to support research seeking a cause for two potentially devastating kidney diseases, Nephrotic Syndrome and Focal Segmental Glomeruloscierosis (FSGS), aiming to improve treatment and find a cure

The charity was founded in 1975 by Elizabeth Ward, after her 13 year old son was diagnosed with kidney failure. The British Kidney Patient Association is a well established charity working to improve the quality of life for adults and children with kidney disease